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Displaying 21–30 of 160 stories results
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Beacon Stories
In honor of the upcoming Mother’s Day, New York Times, USA Today, and Wall Street Journal bestselling author Jennifer Probst is sharing her personal story of her son’s diagnosis with Stargardt disease.
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Beacon Stories
We’re honoring National DNA Day with the Danny family! When Sarah and A. J. found out their oldest daughter Lucia had Stargardt disease, it was a challenge to process her diagnosis. And then they realized their other five children could also be affected. Through genetic testing, they learned their five-year-old daughter Sarafina also has Stargardt disease. Now, Lucia and Sarafina have a bond like no other, and call each other the “Stargardt Sisters.”
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What Does “Blindness” Really Mean?
Beacon StoriesJenny Schisler has retinitis pigmentosa. Jenny wants to spread awareness of what having a visual impairment really means to her and others affected by retinal degenerative diseases.
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Beacon Stories
Adopted into a musical family, Miles Hoyt picked up a guitar at just four years old, and he hasn’t stopped playing since. Now Miles, who has Stargardt disease, and his parents are using music to bring their community together to raise funds for blinding diseases with their Raising Our Sights fundraiser, Smiles for Miles.
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Influencing Positivity for the Disabled Community
Beacon StoriesContent creator and social media influencer Stephanie Renberg uses her platforms to raise awareness for blindness and disabilities in hopes that her openness about her Stargardt disease will contribute to a more inclusive and understanding world.
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“The Future Holds Promise” on International Day of Women and Girls in Science
Beacon StoriesInternational Day of Women and Girls in Science is celebrated globally to recognize the critical role women play in science, technology, engineering, and mathematics. To honor this vital day, the Foundation is sharing the story of Dr. Esther Biswas-Fiss.
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Foundation’s Reach Inspires Partnership for Nixon Family
Beacon StoriesAfter Janine’s diagnosis of an IRD caused by a mutation of the PRPH2 gene, she and her husband set out to learn and help all they could. So they started working with the Foundation Fighting Blindness and have launched the ‘PRPH2 and Associated Retinal Degenerations Program.’
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Blind Advocate Triumphs as a Hockey Pioneer
Beacon StoriesJosh Schneider is a former teacher and student-athlete whose life took an unexpected turn due to an optic nerve condition. Years after receiving his diagnosis, Josh transformed his passion for sports into a platform for advocacy. Today, he thrives as a blind hockey player, defying expectations and leading two foundations committed to raising awareness and providing support to blind hockey players.
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The Inspiring Journey of an Endurance Athlete with Cone-Rod Dystrophy
Beacon StoriesDiagnosed with cone-rod dystrophy in his youth, Dan Berlin has defied all odds by becoming a global force in endurance sports and entrepreneurship. As an accomplished athlete, he has not only dominated marathons across the globe but also co-founded the Team See Possibilities organization, offering support to youth with blinding diseases.
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IRD Community Loses Usher Syndrome Research Trailblazer William Kimberling, PhD
Beacon StoriesDr. Kimberling helped discover the identification and characterization of several genes that cause Usher syndrome.
